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The CAMHS Learning Disability Family Intensive Support Service provide a specialist service in East Sussex. We work with children and young people up to the age of 19 who have moderate to severe learning disabilities, who are presenting significant behaviours which challenge their families and others in their support network and which may be causing worry or harm to either themselves or others.

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We offer a range of interventions in partnership with other services who know your child. Our team offers specialist assessment, advice and support in thinking about the particular emotional, behavioural, communication and mental health needs of children with a learning disability. We run parent and carer groups and work with children and families in the family home and other community settings.

During our work with you we develop a shared understanding of behaviours that cause concern and may do this by:

Visiting you at home to listen to your concerns.

Meeting with other services involved with your child's care to gain an all-round understanding of their needs.

Getting to know your child over time to understand their specific patterns of behaviour.

Our shared understanding then informs the development of strategies and approaches that help to enable your child to communicate their needs in different ways and helps to support families to cope with the behaviours that challenge them.

We do this through working with you and others in your child's network. We set specific goals for us to focus on in the work and together we'll develop a way of working that will enable you to manage your child independently.
Our work with families can be quite brief and short-term or sometimes longer term.

We often need supporting information to help us decide whether our service is the right one for your child and their needs. These decisions are made on your child's level of learning disability, general functioning and level of risk in relation to their behaviours. We will request consent from you to contact others, such as a school or key worker, to gain additional information.

You and the person who referred your child will be contacted with the outcome of any decision. If we are unable to provide a service we will give our reasons and discuss alternative services which may be more suitable.

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Learning disability & family intensive support services

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We offer a range of interventions in partnership with other services who know your child. Our team offers specialist assessment, advice and support in thinking about the particular emotional, behavioural, communication and mental health needs of children with a learning disability.

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Useful websites

NHS – get advice on different health conditions

Mencap – get information and support on lots of things, including relationships, housing, travel and wellbeing

Grace Eyre – local support for people with a Learning Disability

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Advocacy services

An advocacy organisation can help people with learning disabilities speak up and take action about the things that matter to them.

Impact Initiatives (East and West Sussex)

Speak Out (Brighton and Hove)

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annual health checks, cancer screening, mental health and well-being, respiratory conditions

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People with a learning disability often have poorer physical and mental health than other people. This does not need to be the case.
It is important that everyone over the age of 14 who is on their doctor's learning disability register has an annual health check.

An annual health check can help you stay well by talking to a doctor or nurse about your health and finding any problems early, so they can be sorted out.

You do not have to be ill to have a health check - in fact, most people have their annual health check when they are feeling well.

If you are worried about seeing a doctor, or there is anything they can do to make your appointment better, let the doctor or nurse know.

They can make changes to help you. These are called reasonable adjustments.

The video and information below will help you understand more about Annual Health Checks and how you can get ready for your appointment.

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Support for people with a learning disability

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A learning disability affects the way a person learns new things throughout their life. A learning disability is different for everyone. No two people are the same. A person with... Continue reading Support for people with a learning disability

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Arranging services for people with learning disabilities 

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Arranging services for people with learning disabilities 

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Planning and delivering services

Appointing a lead commissioner and pooling budgets across health, social care and education, and with neighbouring authorities, is a way for local authorities and clinical commissioning groups to oversee joined up services that take a whole life approach.

The lead commissioner should have in-depth knowledge and experience of working with people with a learning disability and behaviour that challenges.

Use the following information when planning services

How many people locally have a learning disability (including those placed out of area), and how many are likely to display behaviour that challenges?

An analysis of the needs identified in people's education, health and care plans.

Local registers, including those of people at risk of hospital admission, disabled children, and people referred from other teams, for example - youth offending teams and the police.

Local and regional plans should have a single care pathway and single point of access, which should be reflected in commissioning strategies.

Service planning and delivery should:

support person-centred planning and provision

meet the needs of people of different ages and take a 'whole life' approach

take into account future housing and employment support needs

be co-produced with people who use services, families and care providers

bring together all relevant services and develop a workforce with the right skills, knowledge and qualities.

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Arranging services for people with a learning disability and behaviour that challenges

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Appointing a lead commissioner and pooling budgets across health, social care and education, and with neighbouring authorities, is a way for local authorities and clinical commissioning groups to oversee joined up services that take a whole life approach. The lead commissioner should have in-depth knowledge and experience of working with people with a learning disability and behaviour that challenges.

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Occupational therapists (OTs) are health professionals who work with individuals who have Down syndrome to improve their participation in everyday activities. OTs work with individuals across the lifespan to increase their independence in these activities. These everyday activities are a person's "occupations" and include sleep, hygiene, dressing, cooking, self-feeding, employment, transportation, attending school, and toileting. Some individuals will be learning a skill for the first time (called habilitation) while others will be re-learning skills after an illness or injury (rehabilitation). OTs are also able to recommend accommodations or modifications to activities or the environment to improve the ability to participate in an occupation.

OTs can provide support in a variety of areas including:

Pediatric Occupational Therapy

OTs who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques. Occupational therapists focus on the child's ability to learn skills for independence.

These can include:

Self-care skills (feeding, dressing, grooming, hygiene)

Fine and gross motor skills

Skills related to school performance (e.g., printing, cutting, etc.)

Play and leisure skills

During infancy, health priorities relate to consistent growth and the development of basic motor milestones. At this stage an OT may become involved to help a child with:

Feeding problems: Due to hypotonia (low muscle tone) as well as the weakness and lack of coordination of the muscles of the cheeks, tongue, and lips, feeding can be difficult for some infants with Down syndrome. OTs help with positioning and feeding techniques for both breast and bottle feeding.

Reaching motor milestones: Sometimes OTs and physical therapists work together to help infants develop motor milestones (e.g., sitting, reaching, crawling, grasping, standing, walking). Other times, only one specialist will be involved.

A great amount of skill development happens when a child is a toddler and preschooler. They will likely develop the ability to move around their environment with less assistance. Children will learn how to interact with the many objects around them. An OT may become involved to:

Encourage the development of fine motor skills: Some children will need extra help to learn the hand and finger movements needed for picking up small items, holding a crayon or spoon, and completing a button.

Teach play skills: Children learn through play. During play, they open and close things, pick up and release toys of varying sizes and shapes, stack and build blocks, manipulate knobs and buttons, and scribble with crayons. Children who struggle with basic play skills might miss out on these important opportunities to learn.

Promote the beginning steps of self-help skills: An OT can break down activities into simple steps and suggest positioning or adaptations that might help the child be more independent. For example, a child may have more success feeding herself with a particular type of spoon and dish.

School-age children will need to adjust to new routines, increase independence in self-help and hygiene skills, learn classroom skills, and build friendships with their peers. OTs may help children this age to:

Improve fine motor skill development in the classroom: Many OTs work in the school system and provide interventions to help children learn handwriting, keyboarding, and cutting. They will also look at physical positioning for optimal performance (e.g., desk size) and assist with program adaptations based on the child's physical abilities.

Develop self-help skills: An OT may be able to help a child to be successful in self-help skills including using the restroom, washing hands, putting on a coat, and zipping or buttoning clothing.

Address sensory needs: Sometimes a child engages in behaviors that may relate to their sensory development. For example, excessively putting non-food items in their mouth, having poor awareness of their body in space, using too much or too little force on objects, or not tolerating experiences like using glue or play dough.

An occupational therapist is one member of the team parents can rely on to provide professional assistance throughout the growth and development of their children.

In the US, OT services can be obtained through Early Childhood Intervention programs, public and private schools, and private therapists.

Adult Occupational Therapy

The need for occupational therapy doesn't end when a child turns 21. Although it is less common for adults to receive occupational therapy, many individuals could still benefit from it.

According to Katie Frank, PhD, OTR/L at the Adult Down Syndrome Center in Illinois, you may want to consider consulting an OT for an adult with Down syndrome if:

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NDSS thanks Maryanne Bruni, BSC OT(C) for assistance with this piece.

Citation:
Frank K. What is occupational therapy? Advocate Medical Group Adult Down Syndrome Center. https://adscresources.advocatehealth.com/what-is-occupational-therapy/. Accessed June 20, 2022.

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Physical Therapy, Occupational Therapy & Down Syndrome

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Occupational therapists (OTs) are health professionals who work with individuals who have Down syndrome to improve their participation in everyday activities. OTs work with individuals across the lifespan to increase their independence in these activities. These everyday activities are a person's "occupations" and include sleep, hygiene, dressing, cooking, self-feeding, employment, transportation, attending school, and toileting.

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By gathering information, observing, and working with people in their environments, occupational therapists understand each person’s strengths and needs and the interventions, adaptations, or support they require to reach their potential and lead fulfilled lives. A key principle of occupational therapy is to develop partnerships with other service providers to ensure people with learning disabilities have access to education, work, and leisure opportunities.

Occupational therapy support might include one-off advice and guidance, targeted training for care staff and families, or tailored one-to-one approaches for people with more complex needs or circumstances.

Occupational therapists can be involved with individuals for a short period of focused work or over a long period of time. They also have a consultative role, helping to ensure the rights and needs of people with learning disabilities are acknowledged, understood, and supported.

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Being born: diagnosing Downs Syndrome & LD

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Being born: diagnosing Downs Syndrome & LD

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Parents can sometimes be aware that they will have a child with Downs Syndrome before the birth from an ultra sound.

An ultrasound can detect fluid at the back of a fetus's neck, which sometimes indicates Down syndrome.

The ultrasound and blood test is not full proof, especially if the mother is pregnant with twins or triplets.

Diagnostic testing for Down syndrome involves removing a sample of genetic material. The sample is checked for extra material from chromosome 21, which may indicate that a fetus has Down syndrome.

Prenatal diagnostic testing does involve some risk to the mother and fetus, including a slight risk of miscarriage.

A learning disability will become apparent in the first weeks following birth:

The early signs of a learning disability can be difficult to spot, but may include the following: babies may have trouble feeding, for example sucking and digesting. babies may be delayed learning to sit or stand.

Ref: How do health care providers diagnose Down syndrome? | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov)

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Agencies which can offer Support and Information regarding Learning disabilities.

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Learning Disability

Agencies which can offer Support and Information

Challenging Behaviour Foundation
Family Support Line: 0300 666 0126 www.challengingbehaviour.org.uk
Information for families caring for people with severe learning disabilities who have challenging behaviour.

Foundation for People with Learning Disabilities
www.learningdisabilities.org.uk
Raising awareness of learning disabilities and information on website.

Fragile X Society
01371 875100
www.fragilex.org.uk
Helpline, support and information for families whose children and adult relatives have the Fragile x syndrome (the most common cause of inherited learning disabilities) and professionals working with or caring for affected individuals.

L'Arche
https://www.larche.org.uk/
L'Arche is a network of Communities where people with and without Learning Disabilities live alongside one another, share the joys and challenges of life, and form unique friendships not often seen in wider society.
Apply for support: https://www.larche.org.uk/forms/apply-for-support

The Family Carer Support Service run by HFT
0808 801 0448
www.hft.org.uk
One to one support and advice to family carers support a relative with a learning disability.

Vulnerability Registration Service
https://www.vulnerabilityregistrationservice.co.uk/
Free to register, the VRS is a database of vulnerable people that allows you to alert companies to the fact that you're in vulnerable circumstances. It lets business identify your vulnerability and take it into account when they communicate with you. You can either opt to be declined for financial service applications or add a 'referral flag' to let organisations know about your circumstances - so that they can be taken into consideration.

Useful websites

www.easyhealth.org.uk
Easyhealth was made so that people know where to find accessible health information. Accessible information is information that uses easy words with pictures.

www.choicesupport.org.uk
A leading social care charity that supports disabled and disadvantaged people to take control of their own lives.

(see separate section relating to Autism/Aspergers and section on Education for advice and information relating to education and special needs).

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Challenging Behaviour Foundation Family Support Line: 0300 666 0126 www.challengingbehaviour.org.uk Information for families caring for people with severe learning disabilities who have challenging behaviour. Foundation for People with Learning Disabilities www.learningdisabilities.org.uk Raising awareness of learning disabilities and information on website.

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The Down's Syndrome Association and a charity called Contact both help with benefits Contact: the charity for families with disabled children.

Some benefits like Universal Credit are means tested which means that DWP will take savings and income into account. Other benefits such as Personal Independence Payment (PIP) or Disability Living Allowance (DLA) are not means tested which means any savings you have are not taken into account in the calculation.

Managing finances? Often the Appointee & Deputyship Team of a local council will manage the finances of clients with severe learning disability who lack capacity. This is difficult as it means that the client does not have control over their monies. Also, savings can build up and then the client loses their benefit as the cost of care is then impacted.

HOLIDAYS: the cost of a holiday for someone with DS or LD is HUGE as the cost needs to include paying for two members of staff to go on holiday with the client.

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Child Benefit, and Child Tax Credit or Universal Credit you receive for your child may remain in payment until they reach 20, if they are still in education.

Personal Independence Payment (PIP). At 16, your child will claim PIP instead of DLA. Like DLA, it is to help with extra disability related costs. It is also not means-tested, but your child's needs will be assessed under different rules. PIP can be spent in any way that benefits your child.

Carer's Allowance - this will continue if you are not working or within the earnings limit, and still caring for your child who gets PIP.

Universal Credit can be paid to someone aged 16 or over no longer in education. If in full-time education, it can be paid if they are a student without full parental support or they have limited capability for work (after having a work capability assessment). The rules are complicated so please call for help with this as there are ways to have the Work Capability Assessment carried out.

When your child claims benefit in their own right, such as Universal Credit, they will no longer be part of any claim that you may have, such as Child Benefit, Child Tax Credit or any child amount of Universal Credit. Some families will be better off staying with existing benefits until they come to a natural end (usually before age 20). When your child turns 16, check whether it's better for you to claim benefit for them in their own right, or not.

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Benefits & Finance - Downs Syndrome Association

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Child Benefit, and Child Tax Credit or Universal Credit you receive for your child may remain in payment until they reach 20, if they are still in education. Personal Independence Payment (PIP). At 16, your child will claim PIP instead of DLA. Like DLA, it is to help with extra disability related costs.

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What Is A Learning Disability? See Our Definition | Mencap